Monday, 13 May 2013

Update 24/4

What a lovely week we've had! Wotsit has been adorable this week and really well. Today is day 7 of his treatment and he has remained chirpy & cheeky throughout. We've had lots of lovely visitors and both boys have been spoilt rotten. Wotsit has had loads more energy, has been running around the playroom and playing football, very energetically. He's written a fab poem for his classmates (mostly describing his toilet habits!) and he's even made friends with the clowns! We occasionally have to remind ourselves why we're here...

Wotsit's had a few nosebleeds and needed some extra platelets and he's had a couple of blood transfusions. He was on fluids 24/7 to flush through the kidneys as the leukaemia cells breakdown. These stopped on Monday so he's no longer attached to the drip all the time, which is fab, and we both get a lot more sleep. (Only up once last night.)

The results of his first lumbar puncture confirmed that the leukaemia cells had not reached the central nervous system - yay.

His appetite has increased as a result of the steroids and he wakes up talking about his breakfast (4 weetabix), the snack trolley and the hot dog he's going to have for tea! There are some things he's going to miss about the hospital... Thankfully, the steroids don't appear to have impacted his mood - yet.

Getting him to take his oral meds was a real challenge. Stickers, bribery and physical force have all been enlisted at some point. We've now found a happyish medium with Wotsit taking some as a tablet and lacing his milk with the rest.

Today we noticed he is walking on the points of his toes, and has some pain in his foot/leg, which is a worry as a side effect of one of the chemo drugs is foot drop. He does seem unable to put his foot flat to the floor, in stark contrast to yesterday's football. We are seeing a physio tomorrow to try and help with this. He has only had one shot of this chemo so far and has 4 more to go in the induction phase so not ideal.

Tomorrow Wotsit is going to the 'sleepy room' and actually looking forward to seeing the doctors in their blue pyjamas! He will have another lumbar puncture which will tell us how much the leukaemia cells have reduced by. However, I learned today that we don't need to wait for the results to be allowed home!

Roll on Friday...

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